Monday, July 26, 2004




As new friends, family and visitors find us perhaps a reprint from the first days of this journal would be helpful. You can always read older entries by clicking on "view older entries" at bottom of journal then choosing month from pull down menu. We began in April, 2004.


     Reposted from May 1, 2004

                                         Is MS supposed to ...

Is MS supposed to land you in a care facility by the age of 48? Are you supposed to loose the ability to control most aspects of your body and then your mind.

18 years ago it began for Patti as an intermittent numbing tingling in her fingers that went away on it's on. At the time, hours and hours of neurological testing could at best rule out everything else, leaving the infamous diagnosis of last resort, 'probable MS. Following her first major exacerbation her diagnosis was promoted to 'MS'.

No treatment has been left unturned either traditional or 'alternative'. Weekly RX Avonex shots were no more successful or unsuccessful than an 'alternative medicine' bee venom therapy of 24 bee stings every other day for a year.

MS does as it pleases. Or in Patti's own words, "MS sucks!"

Many well intended publications publish inspirational stories of personal courage and apparent success. Hope in living with MS is critical and needs to be communicated.

Sadly the other side is too often left untold. There is equal courage in those many people with MS who struggle daily in a loosing battle. They fight to live on whatever terms and level is left to them. With daily eroding physical and mental abilities it is a fight against all odds.

Don't buy into any theory of what MS is 'supposed' to be.

By sharing maybe we can tell one family's story of the other side you don't read in MS publications. Silence doesn't help anyone.


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